Background. To develop a community-based model of stroke care, we
assessed discharge planning of stroke patients, available resources and
continuity of care between hospital and community in a remote rural
setting in South Africa. We sought to determine outcomes, family
participation and support needs, and implementation of secondary
prevention strategies.

Methods. Thirty consecutive stroke patients from the local hospital
were assessed clinically (including Barthel index and modified Rankin
scores) at time of discharge and re-assessed 3 months after discharge in
their homes by a trained field worker using a structured questionnaire.

Results. Two-thirds of all families received no stroke education
before discharge. At discharge, 27 (90%) were either bed- or
chair-bound. All patients were discharged into family care as there was
no stroke rehabilitation facility available to the community. Of the 30
patients recruited, 20 (66.7%) were alive at 3 months, 9 (30%) had died,
and 1 was lost to follow-up. At 3 months, 55% of the remaining cohort
were independently mobile compared with 10% at discharge. Of the 20
surviving patients, 13 (65%) were visited by home-based carers. Only 45%
reported taking aspirin at 3 months.

Conclusions. The 3-month mortality rate was high. Most survivors
improved functionally but were left with significant disability.
Measures to improve family education and the level of home-based care
can be introduced in a model of stroke care attempting to reduce carer
strain and reduce the degree of functional disability in rural stroke
patients.

Stroke remains a leading cause of death and adult disability in the
developing world. The Global Burden of Disease study indicates that 80%
of stroke deaths occur in low- and middle-income regions. (1) Based on
death registration statistics, stroke is the most common cause of death
among people >50 years old in South Africa (2) and represents the
dominant type of vascular disease in sub-Saharan Africa. (3) In this
region, all-stroke fatality from available hospital-based prospective
studies is about 30% at 1 month, which is much higher than the 20% in
much older populations in the rest of the world. (4)

In African countries, health is linked to overall development and
socio-economic standing. South Africa is undergoing rapid urbanisation
associated with a change in the risk environment. Sub-Saharan Africa
faces the huge burden of the HIV/AIDS pandemic. Infectious diseases and
perinatal and nutritional disease dominate the causes of death in
Africa, compared with non-communicable diseases in high-income
countries. However, the burden of stroke and other vascular diseases
will probably increase substantially in Africa, with health transitions
in line with changing social, economic and demographic structures.
Because of wide socio-economic disparities, diseases of poverty and the
emerging non-communicable diseases related to lifestyle are likely to
overlap and persist for a long time, posing an additional burden to
health care systems in the region. HIV infection contributes to an
increased risk of stroke, which has been attributed to a number of
factors including opportunistic infections. HIV-associated vasculopathy
is also recognised and may be contributing to stroke prevalence in
younger patients. (5)

Resources for stroke care and rehabilitation are deficient in
developing countries, particularly in rural areas. Patients with acute
stroke are often discharged from hospital without an option of receiving
adequate rehabilitation by trained health care professionals. An
adaptable cost-effective approach to community-based stroke management
is needed for patients after their discharge from hospital.

We undertook a multi-centre longitudinal cohort study in two urban,
one semi-rural, and one rural site, to develop a community-based model
for stroke care in South Africa. Ingwavuma in northern KwaZulu-Natal was
selected as a suitable remote rural site. The community of around 116
000 is spread over an area with a radius of about 80 km and is served by
a single local district health facility--Mosvold Hospital. We aimed to
assess discharge planning of stroke patients and to evaluate integration
and continuity of stroke care between hospital and community. We sought
to determine outcomes, family participation and support needs, and
implementation of secondary prevention strategies. To provide context
for our data, we characterised the demographic profile of the population
in this region, and assessed the hospital and community resources
available to stroke patients in the area and the availability of patient
education programmes at this site. Our focus was on the structure and
function of the home-based care (HBC) system.

Methods

Demographic profile and assessment of resources

Demographic information on the size, age distribution, gender,
employment status and education level of the Ingwavuma population (which
falls under Jozini Municipality) was obtained from online reports from
the Department of Statistics website, based on the 2001 national census.
(6) Additional data concerning income levels, water and electricity
supply, sanitation and dwelling structures were taken from the same
source. The internal annual report of Mosvold Hospital for the year
2006-2007 (Dlamini: unpublished data, 2007) gave the number of patients
seen at the hospital, their length of stay, and the staffing and
resources available at the facility. Data regarding antenatal HIV
prevalence, average life expectancy and causes of death were obtained
from the South African Department of Health National HIV and Syphilis
Sero-Prevalence Survey (7) and from a local mortality study. (8)

Information on HBC services in the area was obtained from the
Ingwavuma Orphan Care Annual Report 2006-2007. (9) To determine whether
or not the HBC services available to the local community during the
study were consistent with those stated in the most recent annual
report, author SW interviewed the director of the organisation, 2 nurses
and 3 trained home-based carers actively involved in service provision.
Information was obtained on the structure and staffing of the service,
the training of home-based carers, case selection and criteria for
visits, the specific services provided by home-based carers, the
frequency and duration of visits, transportation issues, and the
clinical spectrum of cases seen.

Hospital recruitment

Consecutive stroke patients from the local hospital were recruited
and followed up from February 2007 to January 2008. Eligibility criteria
included any patient with a clinical diagnosis of stroke, who was alive
at the time of discharge after a stay in hospital. Written informed
consent was obtained from patients or their caregivers before enrolment.
Patients were assessed at the time of discharge by SW. Hospital
assessment was implemented using a standardised questionnaire including
risk factors for stroke, neurological deficits, secondary prevention
strategies, discharge functioning, family education, discharge
destination and planned follow-up. The 10-item modified Barthel index
(10) and modified Rankin score (11) were used as assessment scales in
recruitment. The modified Barthel index assesses the ability to perform
daily living activities on a scale of 0 (complete dependence on help
with daily living activities) to 20 (independence). The modified Rankin
score is a measure of disability with scores ranging from 0 (no symptoms
at all) to 6 (death); a score of 5 indicates severe disability (the
patient is bedridden and incontinent and requires constant nursing and
attention).

Three-month follow-up

Patients were assessed 3 months after discharge in their homes by a
trained field worker using a standardised structured questionnaire. The
field worker was employed in the hospital's rehabilitation therapy
department and is well known and accepted within the local community.
She was trained by SW on the use of the questionnaire, interview
techniques and the assessment scales, which also included a Carer Strain
Index. (12) The Carer Strain Index assesses the severity of the
physical, financial, emotional, social and overall burden on the carer
on a scale that ranges from 5 (no burden) to 25 (severe burden). The
follow-up questionnaire evaluated outcomes, secondary prevention advice
and compliance, access to community-based services, family participation
and caregiver strain. Stroke patients were asked to rate their own level
of involvement in activities (work, social, housework, community and
sporting activities) before and after their stroke, using a simple
5-point score scale.

Results

Demographic profile

The population of Jozini Municipality was 184 049; 57% were women
and 43% men; 59% were <20 years old. Most deaths in the community are
certified at the local hospital mortuary, although many individuals are
born without official registration and buried without death
certification. The average age at death of those certified at Mosvold
Hospital in 2006 was 39.1 years for men and 41.7 years for women. There
are no reliable data on HIV prevalence in the community, but the HIV
rate among antenatal clinic attendees in the health district was 39.8%
in 2007, when most adult deaths certified at the hospital were
HIV-related.

In the municipal area, 11% of households derived their lighting
from electricity; 85.6% used candles as a primary light source; 74.3%
used wood as a fuel for cooking. Piped water was supplied directly to
2.7% of households, and 34.1% fetched their water from an open water
source. Of households with access to piped water, 52.2% had to walk
further than 200 metres to collect it from a communal source. Over 53%
of dwellings were classified as traditional (Fig. 1). There were no
toilet facilities in 62.3% of households, and over half of those with
some type of facility used pit latrines.

The unemployment rate in the district among working-age men was
56.6%, and 63.8% among women; 80.8% employed men and 80.2% women earned
a monthly income 20 years old in the region had no education. Of
people between 5 and 24 years old, 24.4% had never attended any
educational facility.

[FIGURE 1 OMITTED]

Hospital services

The local hospital supported 10 peripheral primary level clinics
and mobile teams covering 30 clinic points. There were 6 wards with a
total of 246 beds. In 2007, there were 13 doctors at the hospital, and
59 of 107 professional nursing posts were filled. The rehabilitation
therapy department included 4 physiotherapists, an occupational
therapist, a speech therapist and a dietician. Two social workers were
based at the hospital. This staff complement was responsible for
managing 49 000 outpatients annually (156/day) and admitting 9 400
patients per year (783/month), whose average stay was 7 days. Basic
radiography and ultrasound were available at the hospital, but no CT
scanner or other neuroimaging was available on site. The nearest
referral facility with a CT scanner was 3 hours' drive away.

Hospital assessment

A total of 30 patients (6 males and 24 females) were recruited at
this site. The mean age was 68.6 years; 5 (16.7%) were <50 years; 95%
of those >60 years relied on an old-age pension as their main source
of income; 16.7% had no income at all at the time of their stroke. About
half the cohort had spent an average of 7 years at school, while the
balance had no formal education (Table I). Risk factors for stroke
included hypertension (80%), diabetes (13%), smoking (17%), and previous
strokes/transient ischaemic attacks (TIAs) (17%). Three (10%) patients
were HIVpositive.

Most patients presented late, with a mean delay of almost 2 days
from onset of symptoms to presentation at hospital. The average duration
of hospital stay was 6 days. All the patients were discharged into
family care as there was no stroke rehabilitation facility. Two-thirds
of all families did not receive any stroke education on or before
discharge. Of followed-up patients, 80% lived in traditional dwellings
with no water or electricity, and 75% shared a household income of
Access to community-based services

No regular stroke education sessions were provided for the
community at the hospital or its 10 peripheral clinics. Several
organisations in the area provide a variety of services, mostly focusing
on poverty and AIDS. Ingwavuma Orphan Care (IOC) is an NGO started by a
British doctor in 2001 to care for AIDS orphans in the community; it now
provides HBC for the population of the area. While IOC's main focus
remains caring for people with HIV-related illnesses, it provides
support to patients with other chronic conditions, including stroke. In
2007, IOC employed 3 nurses and 45 home-based carers who made a total of
80 visits a month. Although they received no specific stroke care
training, carers provided services such as general health education and
nursing care, and delivery of drugs and other supplies. Each carer
travelled about 7 km each day on foot or bicycle to conduct home visits.
A total of 13 (65%) of our patients were visited by home-based carers at
some point in the 3 months after discharge. Nine patients were visited
by a physiotherapist, and 2 were able to consult a social worker during
this period.

Outcomes

Of the 30 recruited patients, 20 (67%) were alive at 3 months, 9
(30%) had died and 1 was lost to follow-up. Those who died had a higher
mean age (77.3 v. 64.2 years) and had lower Barthel indices on average
(1.9 v. 5.2) at the time of discharge from hospital. At discharge, the
average Barthel index for all patients was 4, and the majority (93%) had
severe Rankin scores in the range 4-5; only 2 (6.7%) were able to
toilet, transfer, and mobilise independently, and 27 (90%) were either
bedridden or chair-bound; 26 (86.7%) were considered by their families
to be completely independent before the stroke. Two of the 4 patients
who were not completely independent before the index stroke died within
3 months of discharge from hospital.

At the 3-month follow-up, Rankin scores for survivors improved,
with 12 (60%) patients having scores of 0-3 compared with only 2 (10%)
falling into this range at the time of discharge (Fig. 2). This trend is
also reflected by improvement in the Barthel indices: at follow-up, the
average Barthel index for survivors was 14 compared with 5 at the time
of discharge. Patients also showed improvement in specific activities:
at 3 months, 12 survivors were independently mobile compared with 2 at
discharge; 15 were transferring independently compared with 2 at
discharge; 5 were bedridden or chair-bound compared with 18 at
discharge; and 11 were toileting independently compared with 2 at
discharge (Fig. 3).

Eight surviving patients (40%) still had severe Rankin scores
(range 4-5) at 3 months; 17 (56.7%) of all patients had severe Rankin
scores or had died within 3 months of discharge (i.e. Rankin scores
4-6). The self-assessment scores reflecting participation in activities
after stroke were reduced in each category: work, social, housework,
community and sporting activities (Fig. 4).

Compliance with secondary prevention strategies

At the follow-up visit, all patients claimed to be taking their
prescribed antihypertensive medication but 11 (55%) of those who had
been prescribed aspirin admitted to defaulting.

Family participation and caregiver strain

The average age of primary caregivers to the surviving patients was
43.7 years, with 20% younger than 30 years; 18 (90%) of the primary
caregivers were female (5 spouses, 4 daughters or daughters-in-law, 5
granddaughters, 2 sisters, 2 mothers, 1 neighbour, and 1 patient had no
caregiver). The unemployment rate among caregivers in our cohort was
almost 80%. The mean Carer Strain Index (CSI) score was 17 in the
moderately severe range (4 of the caregivers who were interviewed had
severe scores, 9 had moderately severe scores, 2 had moderate scores,
and 2 had mild scores).

Discussion

The demographic and socio-economic profile of our cohort reflects
that of the community living in and around Ingwavuma. Many aspects of
their lives are defined by high levels of poverty and unemployment, low
levels of education, large family units and poor access to basic
resources. Only 1 patient was lost to follow-up. Although our cohort was
small, the high 3-month mortality is similar to the all-stroke case
fatality (from hospital-based studies in developing countries (4)) of
about 30% at 1 month. Our stroke mortality at 3 months would have been
higher had we included all in-patient stroke deaths, but these data were
not recorded. The 10 patients who died during community follow-up tended
to be older, with lower Barthel scores on discharge.

[FIGURE 2 OMITTED]

[FIGURE 3 OMITTED]

[FIGURE 4 OMITTED]

Hypertension was by far the most important and prevalent risk
factor for stroke, which is consistent with others who have identified
hypertension as the most powerful predictor for stroke in sub-Saharan
Africa. (13) Despite growing prevalence, awareness of the condition
remains low (14) but, in some rural settings, community education
sessions on hypertension and stroke have been shown to be effective in
contributing towards stroke prevention in the community. (15) Our
patients' claims of being compliant on their antihypertensives were
interpreted with caution as the fieldworker did not check prescriptions
or count drugs. The low levels of compliance on aspirin were probably
indicative of general medication default rates, and we recommend that
this issue be addressed in any proposed model of community-based stroke
care.

Most of our patients had severe disabilities that, at the time of
discharge, required assistance with daily living activities from another
person, and that represented significant changes from their pre-morbid
function, as almost all of them were completely independent before the
index stroke. Two-thirds of patients or their caregivers did not receive
any stroke care training or secondary prevention education on or before
discharge from hospital; this issue must be addressed in any future
model of community-based stroke care.

At 3 months, 17 (56.7%) of our 30 patients had either died or were
severely disabled, and 80% of survivors were left with moderate or
severe disability (modified Rankin score 3-5); this compares
unfavourably with a larger urban population-based study in India, in
which 38.5% of stroke survivors were moderately to severely disabled at
28 days based on Rankin scores. (16) Factors such as the size of our
sample and the selection bias of the study (e.g. long delays in
presenting to hospital after stroke, more severe strokes admitted and
milder strokes less likely to present or be admitted to hospital) limit
conclusions regarding poor outcomes and deaths. Nevertheless, most
survivors in our cohort had significant functional improvement at 3
months, with improved average Barthel indices and Rankin scores compared
with discharge. When questioned about specific tasks, most survivors
showed improvement in their ability to walk, transfer and toilet
independently, commensurate with improvement in the overall indices.

Although our patients showed functional improvement in certain
crucial areas, stroke had a significant impact on their lifestyle. The
self-assessment responses indicated that their ability to participate in
important cultural and social activities after stroke was substantially
impaired. High patient-dependency levels and poor family support are
predictors of adverse outcomes in caregivers, which could be improved by
caregiver training. (17) The lack of a stroke rehabilitation facility,
as well as inadequate home-based support (only 65% of patients were
visited by home-based carers) and high levels of poverty contributed
towards the high levels of caregiver strain. In our study, the burden of
stroke rested most heavily upon women in terms of the stroke patient and
the caregiver.

Any model of community-based stroke care in rural South African
settings should include a system of stroke education for caregivers and
patients, and should implement structures that strengthen the level of
HBC and training. Awareness of stroke and cardiovascular risk factors
(particularly hypertension) needs to be fostered by improved community
education. Nurse practitioners and home-based carers could play an
important role in checking blood pressure and monitoring treatment and
compliance after discharge from hospital. In-service training of
rural-based health care professionals in the protocols of acute stroke
management could also reduce in-hospital complications, morbidity and
mortality, providing optimum potential for improved outcomes following
discharge into the community. Without adequate numbers of health workers
available for rehabilitation in such communities, caregivers are the
most likely candidates to adopt this surrogate role, and could be
trained to be more active in the rehabilitation process. While poverty
and gender inequality remain long-term problems in health care, these
simple interventions can improve stroke outcomes and relieve caregiver
strain in rural settings such as Ingwavuma.

We acknowledge and thank Professor Kjell Asplund for his support
and contribution; Dr Hervey Williams, as medical manager of Mosvold
Hospital, and the other medical staff who helped with recruitment, for
facilitating this study; our fieldworker, Thuli Mngomezulu, for her
dedication and hard work; and Sonja Heigm, to whom we are deeply
grateful. This study was sponsored by a grant from the Swedish
International Development Cooperation Agency and the South African
National Research Foundation.